I know a thing or two: What we have learned while advocating for Young Adult Cancer

First, answer these questions:

Is there is something about your body that you don’t like?

As a teenager or in your 20s were there a few more things about your body that you didn’t like? 

Think about how many times you may have looked in the mirror or at a part of your body and just thought ‘ugh’.

body image Scar Stories you are normal

It’s an awful feeling. But as we grow older we generally find these feelings subside and we gain confidence and understanding about our bodies that help us get over these little ‘ugh’ moments.

We all know that negative body image is a growing concern in our community and an extremely common trait among young people. The 2014 Annual Youth Survey by Mission Australia found that almost 1 in 3 15-19year olds were extremely concerned or very concerned about body image. It’s a problem. We know this much.

But what happens when a young person, already in a stage of life when issues of self-esteem, body image and stressful physical changes typically arise, is thrown a curve ball – a cancer diagnosis and along with that, physical changes that a) they can’t avoid b) are sometimes permanent and c) set them apart from their peers?

self image body image scar stories cancer

In our experience with AYA cancer survivors, we have identified three feelings surrounding scars and physical reminders of cancer that might come as a surprise to some:

body image scar stories scars are not a win

1. A scar doesn’t represent a win, at least not straight away. It would be easy to assume that thoughts like our own Lucy’s are the norm.

I’m happy to show off my 40cm scar… I’m proud of what it means. It means I survived something
— Lucy, Ewings Sarcoma. Photo by April Kendall

We read survivor’s stories and assume that these are the instant response to life after cancer: “seize the day” “I won” “I’m a survivor”. But this attitude is developed with time and healing.

When I finished my last round of chemo everyone asked me how I was going to celebrate. I couldn’t understand why they thought celebration was an option for me. In my world I had just had a terrible experience and was left with a disability and a big ugly scar. I wasn’t grateful for being alive, I was pissed off that I was broken. I didn’t feel strong for having ‘beat’ cancer, I felt weak for having got it in the first place. My scar, my titanium knee bone and accompanying limp were just ugly reminders that my body had failed me, and signs that I was going to look different forever.
— Jasmine, Osteosarcoma Survivor and founder of Scar Stories
body image scar stories a scar represents everything

2. A scar from cancer isn’t just a scar. It can be everything in your life that you hate. It can represents fear, unattractiveness, loss, sickness, difference. Most scars are formed quickly, but the process of cancer treatment is usually slow and gruelling. A scar can hold the memories of every day in hospital, every sick bag being filled, and every vein that decided to hide. Just when you start to feel a sense of normality forming, somebody takes a sideways glance at your scar and you are reminded of everything.

3. It is powerfully uncomfortable to answer this question:

body image scar stories how did you get that scar

It is surprising how many people are perfectly comfortable asking a complete stranger why they are walking funny or exclaiming how much of a ‘beauty’ someone’s scar is and asking how these things have happened. And what’s perhaps more surprising is how deeply and utterly offensive it feels when they do. But people never assume illness in a young adult. Ski accident? yes. cancer? no. And the uncomfortable feeling that many young people get when others enquire about their body, often prevents them from having the confidence to go out and meet new people in the first place.

I struggled with these feelings and more after my treatment. To the average ‘joe’ I think I would have sounded like an ungrateful negative nancy. I complained about my knee instead of being grateful to be alive. I hated my scar even though it was a sign that I survived. And I resented the world for asking about it.
— Jasmine, Osteosarcoma Survivor

Working with cancer survivors of all ages on Scar Stories projects, but specifically with young adults, has taught us a few things:

Slide12.jpg

1. Above all else, most young adult cancer patients and survivors want to feel less alone.

It is through Scar Stories that many young survivors realise that there are many other people the same age who are going through very similar experiences and having similar feelings about their post-cancer bodies. In our advocacy work for AYA cancer a consistent response to ‘what helped, or would have helped you during treatment or survivorship?’ is ‘meeting other people like me’. And when it comes to body image specifically, meeting other young people who have been physically affected by their treatment and aren’t afraid to share these feelings with another, has proven invaluable.

scar stories Lisa you are not alone

2. Second to feeling less alone, is feeling more normal.

I felt societal pressure to express feelings of joy, strength, and courage. But all I wanted to do was tell everyone how much things really sucked, and how I felt like life had let me down.

It is extremely important for our AYA community to be aware that these feelings, in fact all feelings after cancer, are normal. If they are thinking it, chances are someone else has thought it too. This is why Scar Stories publishes not just photographs, but patient and survivor stories that share all the different shades of emotion relating to scars and post-cancer body image.

scar stories body image you are normal

3. Exposure can be therapeutic. Revealing the parts of your body that you may think are unattractive, gives others the opportunity to prove you wrong. This isn’t for everybody of course. But those who have been photographed in a Scar Stories project have expressed feeling special, interesting, and starting to feel more proud of their scars and their experiences. Having professional photographers take their photos means that position, styling, composition and lighting will be flattering and show our brave survivors in their best light. The photographer not only empowers the subject, but helps them tell a powerful story for future viewers.

scar stories body image exposure is therapeutic

 

4. A body is a sacred thing. Cancer treatment can ruin the respect and love we have for our bodies - due to the scarring, the feeling like our body has let us down, or that we have let our bodies down, the feeling like you’re no longer a person, but a patient. A feeling of being a lab rat, poked and prodded with an apparent disregard for dignity. It is so important for medical professionals to be aware of the lasting damages that can be done during treatment when a person is receiving treatment at such a critical, image focused time in their life.

I was still developing my sense of self-esteem in my early 20s. I was only just starting to realise that I was an attractive woman, that was I was desirable, and my confidence was increasing. Then I was cut open, sewn back up, fed poison. I was forced to eat and drink when I didn’t want to. The doctors and nurses saw more of my body, inside and out, than anyone ever had. I had fingers poking and prodding. I was naked a lot of the time. I smelt. Yep, I was smelly - a mix between being toxicity, regularly waking up in sweats, and having a fear of the shower. It is no surprise that at the end of it all I was convinced I was broken, worth nothing, and ugly.
scar stories body image the body is a sacred thing

Given just the chance to support one young cancer survivor to start to repair mentally after treatment is an honour. But Scar Stories plans to help countless individuals, through creative projects like photography, to start feeling beautiful again, worthy and interesting, and empowered to tell their story.

Our support is growing and the team is excited for all that lies ahead.

In summary, the way we see ourselves is important. It is difficult to keep positive after stressful events, and negative body image and self image affects young lives every day. Awareness is key - being aware as medical and allied health professionals, being aware as individuals, and being aware as a community. With the knowledge, we can start working to repair the damage during survivorship and support our community of beautiful, inspiring, and brave cancer patients to be proud of their scars and their stories.

 

References:

https://www.missionaustralia.com.au/what-we-do/research-evaluation/youth-survey